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Guest RobP

Face to Face Support Group for Young Onset

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Guest RobP

Hello,

Has anyone had any involvement in setting up or creating an in-person, face to face support group for Young Onset?

There are no support groups in my area and I really want to be involved in one.  I'm thinking of creating and staring my own group, but have never done anything like this.

I see a therapist weekly and I find talking through issues, anxieties, and anything else helps immensely, so why not start a group where other Young Onset people can benefit.

Thanks

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I found if you find a PD specific exercise program it’s like a support group. The bonus is the exercise and everyone has a positive attitude. 

Good luck!’

 

LAD

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A major difficulty you'll have is just a simple matter of math.  PD is relatively uncommon overall (lifetime risk is under 2%), and young onset is only 5-10% of PD on top of that.  So even in a highly populated area there will only be so many YOPD folks.  Of those only some will be interested/able to attend sessions.  Even those who do attend will usually only continue as long as they perceive benefit, which usually is a matter of months, not decades.

 

Best of luck in getting a group going.  I hope you can make it work and last.

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Guest RobP

@stump  Thanks.  I've seen some of these challenges already trying to find an existing groups.  The forums are great for support too.

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Guest RobP,

One way that might be helpful is to find your local PD Association. In Hawaii our local assn website has information on the various support groups on the island. Maybe they could send out an email to their database saying that you're putting together a new group. They may also have ideas on how to put one together. One other thought is to contact someone who has a YOPD support group and see if they have any insight. Here is the link to our local assn and you'll see the contact for the YOPD group. http://www.parkinsonshawaii.org/oahu Good luck and your community is lucky to have someone like you willing to make the extra effort!

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